MaineHealth and Tufts Launch Expanded Chronic Lyme Study to Uncover Causes of Persistent Symptoms
核心洞察
MaineHealth is doubling enrollment to 60 patients in the second year of a five-year, $20.7 million NIH-funded study on post-treatment Lyme disease syndrome (搜索).
The research aims to determine why 5% to 20% of Lyme patients develop chronic symptoms including fatigue, cognitive difficulties, and joint pain.
Scientists will investigate bacterial strain differences, immune response, genetics, and potential biomarkers as drivers of persistent illness.
MaineHealth will begin enrolling patients next week into the second year of a landmark clinical research trial investigating why some people who contract Lyme disease (搜索) continue to experience debilitating symptoms months or years after the bacterial infection has cleared. The study, a partnership between MaineHealth and Tufts University, is ramping up significantly — doubling new patient enrollment from 30 in 2025 to 60 this year.
Dr. Robert Smith, a scientist at the MaineHealth Institute for Research in Scarborough who leads the Maine component of the five-year, $20.7 million study, said the goal is to learn what treatments will be effective in alleviating the condition, often called chronic Lyme or post-treatment Lyme disease syndrome (搜索). "This study is so critical for us to collect solid evidence so that we can develop an effective approach to the treatment," Smith said. Those treatments, he noted, could be antibody therapy or "might be something we don't know about yet."
The Burden of Persistent Lyme
Lyme disease (搜索), caused by the bite of an infected deer tick, has become a growing public health issue in Maine. A record 4,257 cases were reported to the Maine Center for Disease Control and Prevention in 2025, with 526 cases already logged through April 28 of this year. Scientists estimate that 5% to 20% of people who contract Lyme disease will develop chronic symptoms, which can include fatigue, cognitive difficulties, joint pain, and muscle aches, according to the U.S. Centers for Disease Control and Prevention.
Dr. Linden Hu, an immunology professor at Tufts University, acknowledged the field's long-standing challenges. "Scientists have not made much progress on chronic Lyme in at least 30 years, but this study could lead to breakthroughs," Hu said. He highlighted a critical advantage of the current research: "In this study we are absolutely sure these patients had Lyme. The goal is to understand what is driving chronic Lyme, because nobody knows for sure what's causing it. This research might allow us to pinpoint the causes."
Investigating Multiple Hypotheses
The research team is pursuing several lines of inquiry. Smith said they are determining whether certain strains of the Lyme bacteria — of which there are 15 — are more likely to cause long-term symptoms. They are also examining the role of a patient's immune response to the infection, whether genetics play a factor, and whether chronic Lyme has identifiable biomarkers that could indicate susceptibility to persistent symptoms.
"We're taking a hard look at a number of hypotheses on what causes post-treatment Lyme disease syndrome (搜索)," Smith said.
Study Design and Patient Enrollment
Patients cannot self-refer into the study; they must be referred by their primary care provider to study centers in Biddeford, Portland, Brunswick, Rockport, and Belfast. This year, patients who test positive for Lyme disease (搜索) and either have not yet started antibiotics or are within 48 hours of beginning treatment will be tracked for at least one year. Enrollees will undergo skin biopsies, blood and urine tests, and report whether their Lyme symptoms persist.
The study, funded through the National Institutes of Health, will eventually track over 1,000 patients across Massachusetts and Maine.
The Patient Experience
For patients like Elizabeth Nelson, a 30-year-old from West Bath, the research cannot come soon enough. Nelson believes her chronic symptoms — including fatigue, nausea, joint pain, and balance problems requiring a cane — stem from a tick bite she suspects occurred at a sleepaway camp in 2009. Hospital antibody test results from 2010 and 2025 confirmed previous Lyme infection, as well as prior anaplasmosis (搜索) and babesiosis (搜索).
"I suspected it, but it was good to see those test results on paper so they would believe me," Nelson said. "So they wouldn't think this was some attention-seeking endeavor."
Durland Fish, a Yale University epidemiologist and CEO of the American Lyme Disease (搜索) Foundation, noted that many patients are misdiagnosed because numerous conditions mimic chronic Lyme, including autoimmune disorders. "There's a lot of nonspecific illnesses whose causes are unknown. Not every condition can be diagnosed," Fish said.
Treatment Controversies and Prevention
The CDC advises against long-term antibiotic use for chronic Lyme symptoms, warning that prolonged antibiotic courses can disrupt gut health and lead to conditions such as C. diff (搜索) infection. Fish described the practice of long-term antibiotic prescribing as "dangerous for public health," calling it "a cycle of misinformation and mistreatment."
Angele Rice, 48, of Bath, who has dealt with persistent Lyme symptoms for 18 years, said a strict gluten-free diet and vitamins have helped her recover to the point of working up to 32 hours per week. "It feels like your body is in this constant state of where it's fighting itself," Rice said.
Both patients and researchers agree that prevention remains paramount. The Maine CDC and major state health systems operate public education campaigns emphasizing repellent use, protective clothing, tick inspections after outdoor activity, pet checks, and frequent clothes washing. "We should be doing more prevention," Rice said. "That's something we can all agree on."